Volume 8, Issue 5
March 20, 2004
www.TheRibbon.com(Link: http://www.theribbon.com/ )
1325 Venus Drive
Nashville, TN 37217-1918

It looks like I've boobooed somewhere along the line. It seems that I left out an issue in early March. What was I thinking?? I guess that I'll try to slip in an extra somewhere when we have a lot of contributions. I'm so sorry about this.

I was having a bad time last week. I started getting teary and crying for no reason off and on during the days. It was a shock to me. I thought I was pretty much over Mama's passing other than missing her. As it got nearer to the 15th, I was crying more. But then, Nick fainted the night of the 12th. He was in the hospital until the night of the 15th. I didn't have time to cry for Mama in taking care of Nick. The cardiologist didn't find out what caused the faint but we do know his carotid arteries are good, the 24 hr heart monitor showed nothing unusual, the CT scan came out good. We will just have to hope it doesn't happen again. My personal belief is that it was a TIA as his BP was high when I took it immediately after his fall. I was told once before that a TIA will not show up immediately on a CT scan.

Nick was pretty dizzy the first couple of days home but his mind seems to be somewhat clearer. He is talking more and keeping up with things more. I was very worried about his shoulder as he complained about it hurting after the fall but it seems to be doing ok now.

One thing that I thought was very nice during my time off work is that my boss, Timothy K. our Nurse Manager called about every other day to make sure we were ok. I had several calls from coworkers and I'm telling ya, it does a body good to know that people really do care.

Hugs,

Jamie

The Forgetting: A Portrait of Alzheimer's

'On January 21st, 2004, millions glimpsed the Noonan Family's love of their sister Fran on the PBS special "The Forgetting". Their love is not the fluffy, feel-good stuff of fairytales and romance novels but rather the down and dirty, the so-often dreary, incredibly hard love that is a gift of the heart - a decision of the mind - the bricks and mortar that pave the steep, unguarded, hair-pin curves of Alzheimer's disease. Not only have the Noonans survived AD once, they live it again and again knowing that each of them has a 50/50 chance of becoming a person with Alzheimer's disease. This courageous family faces AD not from the wisdom of septo- and octogenarians, but in the prime of their lives - in their thirties, forties and fifties - sharing the work and the grief of it -taking a proactive approach -finding ways to live and love despite the incredible losses they have already survived and will continue to face. Hear this live presentation to a Boston audience on their thoughts and feelings about what might be the end of their own lives to the memory thief that has stolen so many whom they have loved so well.'

WGBH Forum Network - The Forgetting: A Portrait of Alzheimer's(Link: http://streams.wgbh.org/forum/forum.php?lecture_id =1377 )

A webcast lecture that will let you view it or just listen to it. VERY interesting!

Radio Interview!

Listen to Sylvia Nissenboim on Jacqueline Marcell's Internet radio program "Coping with Caregiving" heard worldwide on http://www.wsradio.com/copingwithcaregiving, discussing:

Coaching and a new offering of Virtual Support Groups for Caregivers.

Click on "Recent Archives" and find February 28th, 6th interview). The interview is available for 24/7 online listening-on-demand (via a free download: Windows Media Player available at the top left of the website.) Jacqueline is the author of "Elder Rage, or Take My Father... Please! How to Survive Caring for Aging Parents(Link: http://www.elderrage.com/ )".

Sylvia Nissenboim
10435 Arthur Place
St. Louis MO 63131
314.989.9056 home
314.409.3896 cell
314.516.2777 work

Author Mary Emma Allen Gives Talk on Alzheimer's

The public is invited to attend a special program with author Mary Emma Allen, Tuesday, April 6, from 6-7 PM, at the Hill Public Library, Hill, NH. Mary Emma will be the featured speaker on her book, "When We Become the Parent to Our Parents.

According to Mary Emma, "Caring for family members has long played a role in social history. With changes in our lifestyles over the years, caregiving for our parents has undergone various transformations and influences some of our writings and art. More people nowadays are willing to write about their experiences and share them in an attempt to encourage others."

Some topics she'll touch upon: facing the reality that her parents needed her to care for them and the reversed roles; chronicling the various stages of caring for a parent with Alzheimer's and a mother-in-law who was nearly blind; journaling one's experiences to help one cope. (Those attending this talk may like to bring a notebook and begin journaling some of their thoughts on their caregiving experiences.)

For more information, e-mail: me.allen@juno.com (me.allen@juno.com)

web site: http://homepage.fcgnetworks.net/jetent/mea

In Passing: Those We Must Remember

Snail Mail dated 3-19-04

Hello gang! Hope this finds one and all well. As for me, I am doing okay. I am writing to share with you and my outreach family that exactly one month ago today at 8:05pm my family lost my dad, in death, to dementia. It has been a long hard road for my brother and sister to walk; but praise the Lord they didn't have to walk it alone. They had the Lord to walk it with them. We also know that one day we will see our dad again. We look forward to that day and it's not that long off "When we will meet our loved ones in the air..."

I still have an Aunt with dementia back home and in the hospital expected to die anytime.

My brother got off work around 1:30pm on 2-27 and went by the Nursing Home to see dad. he helped to feed him his lunch. Daddy got sleepy so my brother helped to put him to bed. And he kissed him on the cheek and told him that "Good Lord willing I will see you later." He went on and did his running around and went on home. When he got home he was talking on the phone and his cell phone began to ring. It was our sister, Mary. She asked if he had talked with the Nursing Home. His response was, "No, why?" She said, "It's Daddy! He's dead! I'm on my way over there now!"

Buster hung up both phones and he and Doris both took off out the door. Daddy had not eaten any supper after the big lunch he had eaten for Buster. He went to sleep and when they woke him up to ask him if he wanted any supper and he told them "no" he went back to sleep and didn't wake back up when he went to sleep.

I guess "a good way to go." A sad way for us to look at it. We didn't get to say bye to him. Maybe this was the way it was meant to be; I don't know.

Sincerely yours,

Judith C. B.

P.S. I am compiling all of the publications I get from the most current date right on down to the end of the year in a notebook for friends who may have loved ones with the disease and can benefit from them.

I Have Alzheimer's

These are thoughts from Alzheimer's patients. Keep them in mind when dealing with your loved one.

Mood swings are part of the disease. I can't control them and they are not specifically directed at you.

I know you think that I should recognize you, but sometimes you may look like my mother, son, sister, or whoever. When that happens, do your best to try to be whoever I think you are for the moment.

I am often frightened and confused so I may create a place of safety for myself in my mind. If I say that I want to go home or back to school, don't keep dragging me back to your reality. Let me stay where I feel comfortable for as long as I need to be there.

My eyesight and hearing are all messed up. So is my body temperature sometimes. Yes, I can be cold on a summer's day. Talk to me to my face, speck slowly, don't yell and screech. Don't keep asking me why I can't see or hear something.

My sense of smell is also going, so that means my taste in foods is changing. Please be flexible about my meals.

My speech is garbled, maybe gone completely, but I can still communicate somewhat with my eyes and body language. Try to pay attention to such signals.

Yes, I probably did know that 'something' was wrong before anyone else noticed or I went to a doctor. I just couldn't explain it, besides I was frightened and upset.

I cannot sit quietly in a chair or stay in bed all day. Sometimes I have to just move physically. Keep my pathways safe so that I can walk around. Remind me to rest on occasion.

Don't expect me to learn and retain new things, my memory doesn't work that well anymore and your efforts will only frustrate both of us.

Please don't feel that you have to insist on telling me the truth about everything, it is not always helpful. Like you, there's little I can do about bad news and telling me about it over and over until I 'understand' only adds to my stress, and stress is very bad for me.

If I am not a danger, I don't have to be medicated just because I am loud and overactive. I know it may be an annoyance to you, but I can't help it.

Don't hurry me. Hurrying me tends to make me forget and then I get confused.

Don't keep asking me questions. This frustrates me and makes me feel like I am being tested.

If I forget something, remind me gently. If I forget that someone is coming to visit, or that I am due somewhere, help me to realize that it is OK if we are a little late or that everything is not ready.

When I forget, either laugh with me or hug me, but please do not try to make excuses for me. When you do that, it makes me angry and I feel that you do not understand what I am feeling inside.

When I say I don't know how to do something, just come and help me. No words are needed and chances are that tomorrow I may be able to do it on my own.

When I tell you something 'dumb' that I did, please listen and try to understand that I am really trying to tell you that I am scared and hurting. I need to be loved and given time to talk about what is happening to me.

Try to understand that some days I almost convince myself that there is nothing wrong with me-and then there are days when I have no doubt that my head is not working normally and that's when you are apt to find me down in spirit.

Please include me in as many functions as possible. If it's something like a wedding, take me, maybe bring a second caregiver. If I act up, walk with me quietly out of the room until I settle down. A few minutes delay won't ruin anything, and if others are upset, it will help them to understand that this, too, is part of life. My behavior may need an explanation, but it is not something to be embarrassed about, don't keep me locked away from the world.

Don't think ill of me for taking off all my clothes. My skin can become very sensitive and I may need a mild pain reliever to help me.

If I'm suffering from depression, a mild mood elevator may help. Don't expect me to 'snap out of it'.

I am not a 'dirty old man' if I make a pass at a young woman. I may just be flashing back to my youth when that was acceptable. Please don't be upset because I find someone attractive. Just tell me politely that it is not acceptable-and be aware that it may happen again.

Don't assume that I am useless because I have Alzheimer's. Don't treat me as a child. Let me do tasks that I can still handle so that I know I am still important.

Keep me active and treat me as you always have. I'm still the same person. I just have a memory problem.

I am still capable of sharing love and affection. Hold my hand, give me a hug, kiss my cheek and tell me you love me-then I know that I still matter to you.

This comes from a wonderful book and website. Please take the time to check it out!

Caregiving 4 Alz - Home Page(Link: http://geocities.com/caregiving4alz/ )

Where To Buy The Book

When The Doctor Says, "Alzheimer's"
Your Caregiver's Guide to Alzheimer's & Dementia

From The Ribbon Bookstore: When The Doctor Says, "Alzheimer's" - Your Caregiver's Guide to Alzheimer's & Dementia

and at all your other favorite Internet booksellers. An e-book is also available at 1stbooks.com(Link: http://1stbooks.com/ ) (enter "Betty Weiss" in the author's box) or phone 888-280-7715.

Links

Facing Alzheimer's with heart, humor, and hope(Link: http://www.townonline.com/braintree/news/local_reg ional/bra_newbrcathyalzheimers03172004.htm )
by Cathy Conley / cconley@cnc.com (cconley@cnc.com)
Wednesday, March 17, 2004

John Barton has Alzheimer's disease. If you are his friend or he thinks he can help you, he will tell you this. Otherwise, you would not know of his affliction. He and Lucille, his wife of 45 years, are facing his disease with heart, humor, and hope.

MSNBC - More assisted living centers consider comfort(Link: http://msnbc.msn.com/id/4534013/ )

Competition, consumer demand prompt changes in adult care.

New Brain Test to Monitor Alzheimer's Disease(Link: http://www.newswise.com/articles/view/503730/ )

A new test that taps brain records so accurately it caught out a serial killer, could soon be used by pharmaceutical companies to speed up approval of drugs for Alzheimer's and other brain diseases, reports Marina Murphy in Chemistry & Industry Magazine.

A New Hypothesis about Alzheimer's Disease(Link: http://www.scripps.edu/news/press/031504b.html )

According to the hypothesis, the disease arises as a consequence of inflammation, which creates abnormal metabolites out of normal brain molecules.

Email Bag

From sadiewells@ddcnet.com (Sadie Wells)

Dear Karen: I have not gotten in touch with you in quite a while, but I never cease to be thankful for your help and look forward to my biweekly messages from The Ribbon. I changed services last year and my e-mail address is now sadiewells@ddcnet.com (sadiewells@ddcnet.com). My husband as you may not remember has had both legs amputated and is in the late stages of AD. He is in a wonderful home, not fancy, but there is a wonderful atmosphere of family and after being in two others, I am so thankful that he is in Bear Creek, in Hudson, Fl. He knows me some days and others does not. But he smiles all the time, is not abusive, is cooperative, and the nurses and aides love him. I am confident that the Lord is walking this path with us. After a year of counseling, your support and two others here in my town, I have evolved to the point that I have become active in my church again, even singing in the choir, play bridge occasionally, go to Georgia or Pennsylvania to visit my families several times a year and with the blessing of many good friends here enjoy the social things like dinners, fashion shows, card parties etc. God IS good, and is always there. I still go to visit Bill every day and now I feed him his midday meal. I am chairman of the Family Councilin Bear Creek and do trivia with the residents every Friday morning and we have a great time reminicing. I think about all of you many times and even tho I have not gotten involved with the gathering place (By that time at night I am usually too tired), I still thank God for leading me to you on the computer. I just wanted you to know that it is possible to put aside that awful feeling that you get when you see the condition your loved one is in every day, and you can live a reasonable life. Thank you all, and God Bless.

From tomhargest@bellsouth.net (Tom Hargest)

For three years I cared for M as she deteriorated to a pleasant old lady with no memory who was unable to carefor herself and who slept most of the time. She was not mean, was incontinent, could not find the right words, spoke little,remembered less each day, ate well, could no longer read because she could not remember the plot but was content and was truly an unbelieveable burden. Her condition regulated everything I did. Yet nothing I did really made any difference to her it only affected her well being.

Then I had a heart attack..now she is in a Nursing Home and she is the same still content and comfortable but I am feeling very guilty because she is there. I am just learning that she does not miss me...she lives only in the very immediate present, I do not have to visit her on a regular basis. She does not know if I do or don't. She only knows that I am there when I show up, I am my own worst enemy in giving up and relaxing. If I could accept the fact that I am no longer a part of her life and I canmove on it would help but that is hard to do after sixty years. What survivors need is to be able to accept that not being there 24/7is not a bad thingit is the sane thing and it leads to longer and more satisfying life. You need to learn to let go.....

From meemawmoe@beggstelco.net (Sharon)

First of all, I want to thank you all again for all that you do. I always read the Ribbon and appreciate all the hard that goes into it. I haven't visited The Gathering Place(Link: http://www.theribbon.com/GatherPlace/ ) in ages and I don't know exactly why. Maybe I haven't wanted to deal with Alzheimer's, which is the reason I am writing. I found out this week that two of Jerry's brother's sons have been diagnosed with it. One is 43 and the other 48. My sister-in-law suspected something was wrong for a while and has been very worried. This means that the disease has worked its way down into our children.

Let me give a little of our family history. Jerry's mother passed away in her 50's, also two of her brothers and one of their children. Jerry's brother was around 58 when he passed and Jerry was 56, all having Alzheimer's. In September, we learned that Jerry's sister was diagnosed also. She is a couple of years older than Jerry. Jerry's only living brother is in his 60's and has not been diagnosed.

There are 15 nieces and nephews including my 2 girls and mine are the youngest, 32 and 22. I don't know exactly what I am trying to say, but I am afraid. Gail, my sister-in-law made the comment of how hard it was to see her husband go through this horrible disease and lose him and now she has to go through it with her children. I can only imagine how she must feel.

I haven't told my girls about their cousin's diagnosis, but I will. I am waiting for the right time. I don't know when that will be. We have our faith in God and He will keep us strong. Will those of you that pray, please keep us in your prayers and keep praying for a cure.

At this moment it is hard to imagine going through this again. I think I am in some sort of denial, again. But I do realize I am not evergoing get away from it, no matter how hard I try. I have been running as hard as I can the last few days. Maybe this letter will slow me down. I will write again when I can get my thoughts together, ha!. Those of you who know me, know that may never happen. I love you all and will be talking to you soon. I am working now and I don't have the time as I did before. You are in my prayers.

Love,

Sharon

From SharronB@att.net (Sharron)

First a letter Sharon got in reply to what she had written for The Ribbon and then her reply.

Hello, I am the Family Caregiver Advocate for Horry County, SC. I shared your bedsore ointment recipe with some of the family caregivers I work with. One caregiver is very interested in trying the ointment, but she has asked me some questions that I can't answer, so I told her that I would e-mail you directly. She asked about the size of the tubes/bottles of ingredients, amounts to use, and how to get it mixed up together. Thank you so much for your help and your ointment.

Mary Lou Brown, Waccamaw Family Caregiver Advocate

Hello,

You are most welcome to use and tell everyone about the ointment that I was so blessed to have came up with. Others have emailed me from The Ribbon too.

I was more than happy to help them with the ointment measures. But here is how it all came about.

I was a health tech and had patients with bed sores and their families were worried, and their doctors prescriptions just would not work. So I thought about what a bedsore or a pressure point sore was, and it was an ulcer. What is good for an ulcer? Well before all those pills came into play, plain ole Maaloxx, then I knew with babies zinc oxide is the main ingredient that works in diaper rash ointments, so I said hum, it may work for pressure point rash and keep feces away from sores too. So I added that too.

Then I thought about how the wounds get infected and reddens and drains, so I just used triple antibiotic ointment. I just mixed them all together and started using them and eventually every nurse started asking for it and family members too, since most caregivers have the task of taking care of their LOVED ones bottom or other sores. As I did with my Mom for many years:)

The amounts I would use is this.

1/4 of a bottle of maaloxx - large bottle ---- 1/3 of a small bottle
1 tube of zinc oxide with either-- it normally comes in one size tube
1 reg size tube of triple antibiotic ointment

It will be a bit like a paste and that is good since it will act as a barrier to the skin for your loved one or person you care for. Wash it off gently and if it is hesitant to come off just let it be, remember it will act as a barrier.

When you start to get a little low just add more. I kept mine and made others up in butter bowls with lids. Needs no refrigeration.

May God Bless you,

Sharron B.

This is what we call Paying It Forward! Something that worked for Sharon is now being used all over! Way to Go Sharron!

Welcome to the First day of Spring!!!

May your days be filled with beauty and joy!

Hugs and Peace,

Karen and Jamie